Respecting Autonomy for People with I/DD (Part 1)

You probably believe that adults should be able to stay up late. To decide what they want for dinner. To choose their friends, or their spouses. So why do we deny those rights to people with Intellectual and Developmental Disabilities (I/DD)?

And we, as a society, do deny people with I/DD the right to autonomy, including the right to make some very basic decisions. UK-based Open Future Learning reported that only 30% of adults with I/DD surveyed were “allowed” to stay up late. The societal restrictions placed on people with I/DD also extend to the big decisions in life, like managing finances, making decisions about healthcare, deciding to make friends, and deciding to date or marry, which in effect denies them financial, relationship and bodily autonomy.

The Right to Autonomy for People with I/DD: A Civil Rights Movement

“I’ve been working with people with intellectual and developmental disabilities for thirty-three years now,“ says ALSO’s CEO, Brett Turner. “I have certainly seen a transition in terms of how people with intellectual disabilities are treated…but I feel like we’re still very much in a civil rights movement. Sometimes that is access to resources, or how society views people with disabilities or has assumptions about them.”

The first general principle of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) is “respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons.” Given that the much of the world agrees upon this principle (the United States has yet to join the European Union and 181 nations that have adopted the CRPD), why are we still reluctant to grant adults with I/DD the right to autonomy? Brett believes it’s a (somewhat misguided) tension between autonomy and safety. “Our system gravitates toward keeping people safe, but in my experience, pretty much everybody—if they’re willing—has the ability to have a full life where they’re a contributing member of our community.” Glenda, an individual supported by ALSO, agrees: “We are capable of being independent just like anybody else is.”

Respecting Autonomy and the Dignity of Risk

The ability to make your own decisions is not just a hallmark of adult life, but a fundamental human need that contributes to personal learning and growth, enhances creativity, helps individuals experience authenticity, and motivates them to work toward goals. Autonomy is also just part of life for most Americans. “I think most of us who are able bodied and do not have an Intellectual or Developmental Disability kind of take for granted all the little things we can do in our lives,” says Harry Norris, a Behavior Support Specialist at ALSO, “like using the restroom on our own, having privacy in our own home, or even figuring out what we want to do with our time.” These experiences are not just a facet of autonomy, but also help us learn how to successfully navigate the world in an autonomous manner. “Most of us have friends and schoolmates who contribute to our life experiences,” says Brett. “Oftentimes people who experience disabilities don’t have those same networks that allow the world to open up for them.”

People with I/DD are also often kept from making choices that could have negative consequences. The ability to make decisions is not just the basis of autonomy, it is the “Dignity of Risk” that allows us to learn the lessons we need to live as an autonomous adult. We make bad decisions like over drafting our bank accounts that help us to make better decisions (like budgeting) in the future. In other words, autonomy is a skill that most of us learn through our own experience or sometimes through our friends and family. Since many adults with I/DD haven’t had the same access to those experiences and networks, they need to build the skills that can help them make good decisions on their own. Keeping them ‘”safe” from making decisions (even bad ones) promotes a lack of autonomy that can lead to stress, anxiety and depression, fear, anger, resentment, and lower life satisfaction.

Autonomy and Decision-Making Are Skills

T.J., one of the individuals ALSO supports, lives independently in a one-bedroom apartment he navigates using a wheelchair. Staff is with T.J. twenty-four hours a day, but he is quick to assert his independence, saying that staff is there to help him talk through things, like choosing what to have for dinner. He is not afraid to ask for help, whether it’s with changing his shoes or remembering something, but does not put up with people telling him what to do—“I am an adult,” he says emphatically.

ALSO staff help T.J. build autonomy skills in various ways, including visual tools and reminders. An enormous whiteboard calendar posted in the living room reminds T.J. of scheduled appointments. Other checklists help him break down long-term goals into tasks he can work on every day. Guidelines about phone use are posted on his bedroom wall and another laminated reminder above a punching bag reads, “When I have big feelings…” T.J. says that using the punching bag helps him remember that he is in charge of his behavior.

In addition to visual reminders, ALSO staff use interactive worksheets, have cooperative conversations with stakeholders, and create social stories that provide a verbal and visual explanation of new or complex situations.

Harry, one of our Behavior Specialists at ALSO, suggests keeping a few basic principles in mind when building any autonomy and decision-making skills:

• Collaboration – For the support to work, it is vital to get buy-in from the person supported.
• An explanation of the benefit – How will the skill help them?
• Information about the skill. Harry suggests narrowing down any skill to a goal that is achievable to the person. For example, learning how to do laundry may begin with simply pushing the button that turns on the washing machine.
• It’s important that anyone helping to build a skill is kind and supportive. “No one likes to be seen as a failure,” Harry says, “so we use the concept ‘save face’ a lot.”

Harry also uses what he calls the “Four All-Important Questions”:

• What are we doing?
• When are we doing it?
• What time are we going to be done?
• What are we doing next?

As he says, “No one likes to be in the dark.”

ALSO’s Person-Centered Approach Supports the Right to Autonomy for People with I/DD

There’s another important question that is central to building an autonomous life, one that is too seldom asked of people with I/DD and their families, except at ALSO: What is your ideal situation?

“Asking that question can lead to possibilities and supports that sometimes we didn’t even know were possible,” says Brett. He cites an example where a family was living in “absolute hysteria” after a young woman returned to the family home after a tragedy at a 24 hour residential facility (not connected with ALSO). The parents couldn’t figure out how to go to work and still give their daughter the support she needed. And then ALSO asked the question: What is your ideal situation? “Well,” the parents replied, “we’d like our daughter to live in her own place where she’s close enough that we have eyes on her, but are not her primary support provider.” It didn’t seem possible at first, and it took work, but ALSO created a 24-hour supported living situation. The young women has been successfully living independent in a separate apartment attached to the family home for going on 13 years. “So much has happened because of that simple yet profound question,” says Brett. “It’s something I’m quite proud of and I think it’s unique to ALSO.”

If you respect the right to autonomy for your family member, want to explore what personal autonomy can mean for you, or would like to learn how to create your ideal living situation with ALSO, join a tour or contact us today at info@alsoweb.org or (503) 489-6565.